So we all know I’m really playing catch up and that this post is actually being written in January. I’m not going to lie, it’s a hard one. And will probably be hard for my family to read, but I also feel looking back on what was such a difficult time for our family is also a testament to how far little Henry has come.
I can only share what I know and what I experienced. I cannot express the agony that Chris and Laura experienced in the days after their son was born. But I can share this much…
On June 19, at two days old, Henry was admitted to the NICU when his little body started to fail. Mom and I were at an all-day seminar and got text messages from Chris that he had been admitted and the doctors were running some tests because his blood sugar levels were dropping and he was breathing fast. That’s all we knew. Mom and I decided to book it out of the seminar at 4 p.m. and head to the hospital. We had no idea of what to expect.
We arrived to find Laura and her Mom in the room. Chris was with Henry and came down to the room shortly after we arrived. That’s when the doctor walked in with an update. They believed Henry had a metabolic disorder but there are thousands of them and they didn’t know which one he had. Some are minor, some can be cured, and then there are those that are deadly to infants. The doctor apologized for being so blunt, but told Chris and Laura that Henry could succumb to the illness. It was that serious.
That took me a second to digest. What did he just say? My heart broke right then and there into a million pieces for Henry, for Chris & Laura, for our families.
The doctor finished explaining everything they were going to do next, and left us to be together. Mom called our priest and asked him to come to the hospital and when Laura’s dad and Father David arrived, we went to go see Henry.
He was a very sick little boy.
Father David baptized Henry with the six of us in the room as witnesses. And the prayers started to flow. The hospital staff was so wonderful. They did what they needed to do but let us have the time and space Chris & Laura needed, knowing we were probably breaking capacity & visitor rules.
The overnight doctor also came in and filled us in on what they were going to do overnight. Henry would have some more tests done, an ultrasound, and they’d monitor his levels, of course. They had to wait for his PKU test, which they put on rush, to find out what metabolic disorder he had. His heart was becoming enlarged, he was having clotting problems, breathing problems, his liver was also failing. There was a lot going on in this little boy’s body that wasn’t supposed to be happening.
But that night, the doctors found something else. All the pieces were coming together and they started to form a new diagnosis. Then they found it – Henry had a mass of arteries and veins in his brain known as an Arterior-Venous Malformation (AVM). What I took away from it, and I may be completely wrong, is that it was pulling blood from his organs and mixing it up so that the oxygenated blood and non-oxygenated blood was going to the wrong areas & making his organs work harder & go into failure.
But the good news was, it can be cured. And there is one doctor on the entire continent who works out of New York and has been successful in doing the procedure on infants. But this little boy needed action – and fast.
There was so much more that was going on behind the scenes over the next 24 hours than I can begin to explain: to get Insurance straightened out, get Laura checked out of the hospital, care for their other children straightened out, plane tickets, etc… I look back and am amazed at what Chris & Laura went through. Their parents were are amazing. I heard amazing stories about their case worker and what she did to fast track everything. What a blessing!
By Saturday morning (June 22), Henry was on a Careflight plane being airlifted to New York. There was an extra nurse on board with him so Chris & Laura flew commercial and would be reunited with their son in the Big Apple.
We all saw them off at the airport – LOTS of hugs!
And after a few more tests in New York, the doctors and staff there started their amazing work to close off the malformation in Henry’s brain.
Again, the way I understand it is that they went in through his umbilical cord and up into his brain where they injected a “medical grade super glue” to start closing off the arteries and blood vessels feeding the malformation. It took two procedures to get the malformation closed off to the point the doctor was satisfied. His work isn’t finished, but Henry could now begin his road to recovery.
Chris & Laura were amazing about keeping us updated through their Caringbridge page with medical updates and pictures of Henry’s progress.
And after weeks of being in New York, Henry was finally eating on his own and was ready to come home.
After passing his carseat test (above), they got to check out of the hospital and fly home on a commercial flight. (That’s my favorite photo of him, by the way, with his fingers gripping the blanket, saying, “I’m ready to go home now!” – Little did he know, he had adoring fans waiting for him there!)
And at 1 month old, on July 17, Henry came home with Laura and Chris!
I can’t even begin to express how much I’ve simplified the events of Henry’s first month, the emotions, fears and celebrations, the help of everyone involved, the agencies who helped out, the friends and friends of friends who prayed.
And since I AM writing this in January, I can tell you Henry is doing GREAT. He’s been closely monitored over the past five months and is now preparing for round two… the next procedure in New York. Later this month, they’ll all fly back out East and the doctors will go in to close off more of the malformation. And they’ll continue to return to New York as Henry grows.
So the prayers are still needed. He still faces challenges ahead but he also has a very large support group cheering him on.
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